Sunday, August 21, 2016

Memories are strong even 7 years later...

Seven years ago today we spent 9 grueling hours in the surgical waiting room at Children's Hospital. All we knew was that part of Reagan's brain did not develop correctly and needed to be removed to stop the seizures.  

What I always find interesting is how vivid the memories continue to feel even after all these years. I remember kissing her good-bye and not knowing if I would see her alive again. I remember walking into the room and thinking at 2 mos old she looked so small in that huge bed. I remember her body looking so lifeless and being angry she needed so many IVs that they even had one inside her diaper. I remember thinking that seemed so wrong. I remember my heart aching to pick her up and tell her it was going to be ok but being told I couldn't. I remember having to wait to pick her up for what felt like forever. And I remember when I could finally hold her not wanting to let her go...sitting up all night in a chair holding her and just weeping about the unknowns of the future. 

Each year the pain lessens as we see the amazing progress she is making but there is always a stark reminder of our past and the road ahead. Today I'm more hopeful than last year and I pray next year will feel the same. What I do know is that we are blessed to have two amazing children who never give up, who live life enjoying the moment, and who are happy and smiling. And truthfully, happiness is what we all want for our children and what we are all trying to achieve. And although this ride we call life goes up and down, I'm learning that the true meaning is to enjoy every day we have together and make the most of it.

Sunday, July 24, 2016

Visit to the Physiatrist, Making Music and a Busy Tooth Fairy!

Visit to the Physiatrist
I am happy to say it has been a very slow year for doctor's appointments.  I'm intentionally cutting back the number of appointments and just choosing to space them out more.  So far this hasn't gotten us into trouble and it really feels good.  Cole is still doing weekly occupational therapy and weekly music therapy, but just cutting back the doctor's appointments has been helpful in feeling more normal.

We had a good visit with Dr. Morozova although Reagan was hopeful the doctor would say that since she hasn't been falling she no longer needed to wear the leg brace.  Unfortunately that was not the case and she feels strongly that Reagan needs to continue to wear it to prevent her leg getting tighter.  She was very happy to hear how well she was doing in all her activities and agreed that for now she is ok without occupational therapy since she has so many extracurricular activities.  We've talked about having Reagan participate in the bi-manual therapy camp at Columbia University in NYC next summer but she said she's not convinced it will be worth the time and money (it's extremely expensive) over and above the activities we have her doing now.  We decided to discuss in more detail at our next appointment in six months.

Piano Trial was a Hit!
In addition to Music Therapy through A Child's Place, Cole has been taking music lessons from a school music teacher in Leesburg.  He has really enjoyed the sessions and is making great progress in understanding music concepts and rhythm.  Reagan has been going with me to these sessions and started asking when she would be able to take lessons so I spoke with Jessica and we set up a trial lesson after Cole's last week.  I was worried about her getting discouraged with her left hand but she did GREAT!  Jessica thinks she is ready to try it and she is willing to teach right hand only if necessary but will plan to encourage the left hand to at least start to try to play the keys.  We are super excited that she's interested in this since it is the last of the three things the neurosurgeon suggested we try with her when she was diagnosed with left sided hemiplegia and Cerebral Palsy after her surgery.  We plan to start lessons and I can't wait to give updates!  Next up...getting a piano!

Hershey Park
Between the beach and camp this week we had a week off to decompress and have a schedule-less week.  The kids decided it would be fun to go to Hershey Park and we did!  We went with my friend Lisa and her kids and they had a blast.  Reagan was finally a Hershey bar and was so excited to be able to ride the big roller coasters!  And Cole was absolutely satisfied to stick with the Reese's rides.  The park was so empty we were able to ride the swings (while waiting for Reagan to go on the Comet) four times in a row without getting off!  My favorite part of the day was when we decided to go on the log ride and it was the first time Cole had gone on any type of roller coaster where it goes up and up and up.  As we were going up he looked over and said, "Hey mom, if we have to go up this much does that mean we have to go down next?"  SO cute.  Yup!  He loved it and said it was his favorite part of the day "landing in the water city down below."

The Tooth Fairy has been Busy!
In addition to all this fun, Cole also lost his first tooth on July 23rd, 2016!  He was so super excited - the first thing he said was, "it's like having a tunnel in my mouth."  Although he was very confused about the chain of events.  He went to bed and kept saying, "she hasn't come yet".  Then he wanted to know how long she was going to stay.  And although Reagan was set to have her tooth pulled right after his, she was too nervous after seeing the blood in Cole's mouth.  Needless to say, it was the first thing she asked her daddy to do the next morning and just like that, she lost tooth #5 on July 24th, 2016.

And as if I needed MORE on my plate, I had a weak moment that has cost me dearly.  We were purchasing mulch one day a few months back and Reagan asked if she could buy some fairy dust they were selling at the nursery.  At the time I thought, ok, no big deal.  We'll sprinkle it on the rose bush her grandmother gave her last year and it will make the Garden Fairy take extra special care of it. true Danielle style I suggested we get a fairy house.  What Was I THINKING?  So it has taken months (mostly due to procrastination) but we finally put together the house, yard, mailbox, flagpole and bench.  She wrote a note to the tooth fairy and let her know that she can move in there when she comes to pick up her tooth.  Unfortunately, she now expects this fairy dust to actually make a garden grow around the house.  When we got back from running an errand today she said, "Oh no, our dust didn't work!"  When I asked why she reminded me that flowers should be growing.  As if our Christmas elf isn't enough, we now have a fairy moving in.  But I know Reagan will be excited to find flowers and a note from her fairy when she gets up in the morning.  The things we do for kids!!

Bischoff Vacation to OBX !

Wow - what a fun week at the beach!  We were so blessed to be invited to the beach with Johnny's family...all 21 of us!  We had a stunning home right on the beach in Duck, NC in a neighborhood called Four Seasons.  It was a week filled with no schedules, nothing we had to do, and lot of time with family.  It's so fun watching the cousins playing together - there are 5 in the middle/high school/college age and then another 6 in the seven and younger age range.

The first morning we decided to show the kids how a sunrise a the beach looks.  As we walked into their room to wake them at 5:45am they were already awake and peeking out the window.  It was a beautiful sunrise and they thought it was really neat how one minute there was no sun and the next it had appeared.  Because Cole is so interested in planets we've been trying to explain the Earth's rotation, but it's a hard concept to grasp.  I think this helped slightly as he could see it coming around the edge of the Earth.

It was a rather hot week with several days in the high 90's but we had a pool at the house so we were able to spend a little time at the ocean and cool off in the pool.  We also went into town a few times for the obligatory shopping excursions for t-shirts and a visit to Nags Head Hammocks.  Unfortunately after a full day in the pool and at the beach Cole also had a migraine Monday night and was vomiting over night.  Although he seemed better Tuesday morning he started sliding down hill and was out for most of the afternoon.  We woke him for dinner and sent him back to bed and he was luckily feeling better Wednesday.  We decided to keep him on the pain meds to keep the headache away.

The episode was a bitter reminder of the issues from last summer and the stark reminder that we really don't know why he gets these head aches.  However, with each episode we gather more information and hope to start drawing some similarities that help us learn how to prevent them.  I'm still of the opinion that he gets them when he has been overstimulated and possibly in addition to being over heated.  Luckily we had all the time in the world to cuddle him back to health and had no where to go. And overall, it was so wonderful for the kids to have so much quality time with their dad.  And that is priceless!

In addition to relaxing by the pool and beach we also surprised the kids and took them on a Cessna tour of the Outer Banks.  Although not excited right away (Reagan's exact comment was, "That's it?  Our surprise is riding on a plane?") they were over the moon once we got up in the air.  It was a really fun experience for all of us.  It was especially cute hearing Cole talking on the headset.  You could tell he liked hearing his voice.

We were also able to surprise Johnny's mother on her 70th birthday while we were there.  The adults took her to dinner while Pop and the grandkids decorated the house.  They had balloons, decorations, and cake and we sang her happy birthday.  I think they really liked surprising her! Overall we had a fun trip and enjoyed spending time with family.  So many fun memories that I know my children will cherish for years to come.

Summer Camp, Summer Fun and New Bikes!

Summer Camps in Full Swing
Since we aren't going away for 4-5 weeks this summer for constraint therapy our summer is finally long enough to schedule some camps for the kids.  Cole's first was swim camp (30 min each day) at the school where both take lessons already, Tom Dolan School.  This week Reagan was in gymnastics camp at Dulles Gymnastics with her friend Emma.  She was very excited to try gymnastics again and was very hopeful she would learn to do a cartwheel!

Then Cole spent a week at Star Wars camp at Claude Moore while Reagan was at golf camp at 1757.  I was very impressed with the professionalism of Claude Moore and he came home every day very excited to tell me about this adventures that day.  And it all ended with light saber wars and he even got to bring it home!  I was a little worried Reagan would find five full days of golf camp too much so I enrolled her the week of 4th of July so it was only a four day week.  Clearly I had no reason to worry - she quickly made friends with two other girls there and had a lot of fun all week.  It was high 90's all week but she left every day with stories about her day and a big smile on her face.

Reston Zoo
In addition to camps, I've carefully included time in between where the kids have no scheduled activities.  It has been hard for them to not know what to expect each day so I bought a small white board and each night after dinner we write out what we have to do the next day (like therapy or Tae Kwon Do class) and then we talk about what else we'd like to do.  It has really helped the kids feel like they are included in deciding what we do.  One of the fun activities we decided during our camp-free week was going to the Reston Zoo with my friend Lisa and her two children.  It was a very fun day, albeit very hot.  Their favorite part of our visit was feeding the birds - always a big hit! They were also able to pet an alligator and go on a Safari ride on a wagon pulled by a tractor.  We've been to this zoo several times, but still a lot of fun for the kids and they seem to learn something new with every visit.

Creek Walks, Swimming Pool and Cunningham Falls
Some of our other camp-free week activities this summer have included going for walks in the creek behind our house, spending time at one of our community swimming pools, going to Volcano Island (a local water park) and visiting the lake/beach at Cunningham Falls State Park in Thurmont Md.  It has been so fun finding new adventures and revisiting old ones.  I find the kids fight less when they have something to look forward to and are preoccupied with their activities.  This makes for a better day all around!  I feel so lucky to have so many activities at our disposal and so close to home.

Both Kids Get New Bikes
It seems a never ending battle to keep a bike in the garage that is a good fit.  Bike riding to date has been very tough for both children, but something has clicked recently and they are both really enjoying it now.  Both have larger bikes and we started taking them to the cul de sac up the street where there is more flat pavement.  They've both had their fair share of falls, but they always get up and try again.  It's fun seeing them enjoying it and I have a feeling that pretty soon I'm going to have to get one of my own so I can keep up!